It’s my party and I’ll cry if I want to

The other day, my Best friend Gary and I had our overdue ‘catch up’ conversation. I’m not sure if I have said this before, but Gary lives halfway across the country and most of our time spent together is on video chats. Our friendship began in a facebook group about Tysabri, and has continued for more than 10 years.

During our “catch up call”, after we talked about each of our grandkids and our children, the subject of my health, more specifically two of my recent posts, Are you prepared to Die? and Are you ready to Live?, came up. While Gary understands my fears, he is concerned that I may have scared other people (especially those newly diagnosed with Multiple Sclerosis.) He feels that someone reading my posts may feel that because they have ms, they will die. I quickly argued that I only wrote the truth. I never said that MS kills people. (At least I didn’t think that I did.) I AM SCARED! I don’t like my choices. I honestly feel that I am playing Russian Roulette and I am MAD! BUT, None of that excuses the fact that he may be correct.

Before I continue today…..

I want to apologize if I have mislead anyone, making them believe that being diagnosed with MS is an automatic death sentence. While I feel that this may have been true many years ago, medical advancements and scientific research have made LIVING with MS much more manageable. However, I promised myself when I began writing this blog that all of my posts would be honest, no matter how embarrassing or unpleasant they may be. I would talk about the uncomfortable parts of MS in addition to sharing tools that I have found to make living with this MONSTER a little easier. I believe that 80% of the time, I prove in my writing that laughter IS the best tool I have for managing living with MS and the many other injuries I frequently obtain.

Today however is not that day. Today I am angry! I am angry because even though we can try to take steps to live more comfortably and possibly slow disease progression, the disease ultimately has control. In the post “are you ready to live“, I said that I would be doing more research into the newer MS drugs available and I have. When I am done VENTING here, I will share my latest conversation with my MS specialist about my concerns and my next steps.

But first please take a walk or a read with me, and see my fears through my eyes

First drug on the table…. OCREVUS (the full list of potential side effects can be found here.)

Progressive Multifocal Leukoencephalopathy (PML): Although no cases have been seen with OCREVUS treatment in clinical trials, PML may happen with OCREVUS. PML is a rare brain infection that usually leads to death or severe disability. ( remember this is the reason I am being urged to stop Tysabri)

My brain does silly shit here.

Ok Cancer? …. Just keep having mammograms, if I get it, just get a boob job. (That’s what I did when I had cervical cancer)…. just take it out!!!!

PML, are you fucking kidding me?

and Herpes…hmm How do you see this conversation going, “Um Einstein, would you care if I took a drug that could give us both herpes”? Let me save that prospect for Valentine’s Day don’t you think? Before I even talked to my doctor, sadly enough the deal breaker for this drug, was that Thing 1 said I wouldn’t be able to kiss my grandkids anymore. “Mom you know that herpes can be lethal to babies right?”… um no I didn’t, in fact I don’t know much about it at all.

Severe liver injury including fatal liver failure has been reported in patients treated with leflunomide, which is indicated for rheumatoid arthritis. A similar risk would be expected for teriflunomide because recommended doses of teriflunomide and leflunomide result in a similar range of plasma concentrations of teriflunomide.

Hair Loss

Maybe I should be embarrassed that I wasn’t so worried about the fatal liver failure as I was about the hair loss, but again I am being honest. YES I know it sounds pretty vain.

My research of the above mentioned drugs, also talking to other patients that have previously been on Tysabri and switched to Ocrevus or Aubagio. 70% of the people I talked to regretted switching. They stated that they immediately went downhill after the change. I also discovered there are now several studies being conducted about The “Rebound Effect” after stopping Tysabri or the development of “IRIS” (Immune-reconstitution inflammation syndrome) which can also be fatal or cause rapid acceleration of disability. Did I mention this news really made me angry?

Last week, I got the results of my JC virus retest back. It was not a false positive. 😦 In fact it is a pretty high positive. I sent my doctor an email to discuss the information I had been hearing/reading, and asked him to call me back. When he called, the first thing he said to me was, “I don’t believe you have PML and just because you are high JC, also does not guarantee you will get PML but it greatly increases your odds”. I shared my concerns about changing drugs with him. He did chuckle when he responded that Ocrevus does not cause a sexually transmitted disease, or breast cancer. The herpes virus that they are speaking of is shingles…EWWWW I had chicken pox at 25 and was hospitalized because of the fever and hallucinations. I hear shingles are many times worse. He also explained that Ocrevus does severely weaken your immune system though making you more susceptible to cancers and other infections. The final concern with this drug is that it does not provide the “energy burst” that you get after receiving Tysabri. Often times it causes the exact opposite effect. 😦

Next we discussed Aubagio. He feels that not only does the drug not possess the strength of even the previous MS drug I was on. (that didn’t work) but also because it is a pill, my body may not respond to it because I also have Gastroparesis. How did I forget about that?!?!?

Well crap there goes the next drug I had started reading about, Mavenclad. SMH.

BUT, There is another up and coming drug for MS (not yet named) that is delivered in the form of a monthly shot. That may be something to consider.

The doc, I call him the wizard, and I decided that I should still have new MRI’s done to rule out PML. At the very least, this will give me a new baseline for the activity of my disease. He has also ordered all of the blood tests required for each of the drugs I was considering to see if I am even eligible. For now, I am going to stretch out the time between my Tysabri infusions to every 6 weeks instead of every 4 while I make a rational, NOT angry decision.

The girls and I are going to a drug talk hosted by the makers of Ocrevus in the beginning of March. If I do change drugs, it will probably be to this one.

I do realize that being angry doesn’t solve anything. It won’t help me make a decision any quicker, and it won’t change the outcome of any decision. But I am angry and it’s ok. I do believe feeling anger AND talking about it is part of the process!

A little over a year ago, (maybe two years ago) I made two videos on Youtube. One is My story about how I was diagnosed with ms, and the other is what I still feel is Good advice for someone that is newly diagnosed. I went back and watched them the other day and they helped ‘calm me down’. They also reminded me of what I have been through, and what I have survived. If you are interested, please take a look but clicking on the above links.

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17 thoughts on “It’s my party and I’ll cry if I want to”

Grace, do yourself a favor and DON’T read about potential side effects. I did too once A LOT and according to those I would have been long gone. And forget about Google, please.
It’s ok to be mad. You can vent all you want here. The ones you got to know you KNOW you’re not suicidal.

Are these the possible side effects that you are listing or did these come straight from the doctor? Because, if these symptoms will LIKELY occur, I personally wouldn’t take either! Have you ever read the side effects of the birth-control PILL??? Possible side effects should be mentioned here, not likely but could happen…if I would have thought those side effects listed on the PILL would happen to me, I’d probably have enough kids for a team sporting event! I am not saying play Russian Roullete with these symptoms, definitely do not take these warnings casually. If they are as severe as this, what percent do they affect? Very Likely? I just wouldn’t… but it IS YOUR party! Thinking of you. xo

The side effects are from the drug company websites big bold letters on the front page. (I was trying to learn about dosing information) I know that I “do this to myself”, which is what Gary was talking about. I did they same when starting Tysabri. (Which is how I met Gary) If I stay on Tysabri without changing dosing my numbers are 1 in 100 that I will get PML, which is lethal. Of course that makes me want to switch but I don’t want to jump from the frying pan into the fire. I also remember where I was pre tysabri and knowing that I could go backwards scares me too. As you know, writing and expressing your emotions is therapeutic and I guess that’s what I am doing. Ty for listening and commenting Kim

Definitely write out where you are at. I kind of came across as the devils advocate… this was not my intent. I want you to get the treatment YOU want. Your diagnosis is definitely scary enough! Medication always comes with risks. Lethal just should not be one! For crying out loud! Right? You keep blogging about this., get your thoughts down. You know whatever you decide I am behind you 100%. Remember to take a break once in awhile. Love up them grand babies! 💜💜💜

Devil’s advocate is a good thing Kim. Life would be so boring and mostly wrong if people always felt exactly the same. I meant what I said..ty for commenting it really means the world to not be alone 🙂

I get his point but – big BUT – I always applaud your honesty. More of it is needed. I don’t have MS but with my other conditions I’ve felt mislead and pressured by the super positivity all the damn time on some sites and blogs. Showing the other side is so, so important. And actually there will be a lot of people that read your posts that will learn something (such as with your recap over these meds, and their possible worrying effects) and will feel less alone in how they’re feeling (scared, angry, utterly shit).

I’m really sorry about your high JC. Every time I read PML I think it’s PMPL (you know, like LOL) 😂 Sorry, shouldn’t laugh! I’m glad the wiz has got a plan in as much as doing more MRIs and bloods to give a better idea of viable options. By the way, have subscribed to your YouTube channel – love the videos!
Being angry does, I think, serve a purpose. I don’t know if it’s the same for you but sometimes that’s what keeps me going, what helps drag me back from the edge. It’s the fire to keep pushing forward, and we need that.

As always, keeping my fingers crossed for some kind of positive twist in this story for you lovely. In the mean time I hope you’re able to distract yourself, rest up, relax a little this weekend ♥
Caz xxxxxx

TY Caz! I just had the boys for the last 24 hours and all my anger has melted away for the time being. I plan on hanging in ‘this’ place for as long as I can 🙂 Ty so much for subscribing to the channel…. I might actually have to start adding stuff again…. Have a great weekend. I don’t think I elaborated on your last comment, but I do have a spare room and plenty of time if you ever do want to plan a trip here!!!

Those side effect lists can be so scary, but the drug companies have to include even the most random and rare for legal reasons, like they can’t be sued if they mention it, no matter that it happened maybe once in a million cases. At any rate, they ARE scary, but I hope you find something that helps and doesn’t freak you out!